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The faces of autism

The Person Inside

It’s serendipitous that my last column falls in April, which just happens to be Autism Awareness Month.

It’s promising to see events that raise awareness about autism, such as the annual 3K walk organized by Spectrum: Autism at Cal. But despite these causes, there is still a lot of confusion surrounding this diagnosis. And as a young autistic, I’ve faced a mess of this autism confusion.

UC Berkeley’s Disabled Students’ Program has a weekly social group for autistics. I’m slowly trying to type on my iPad and keep up with the much quicker conversational flow of some of my fellow autistics. On many fronts, their issues seem quite different from mine. We all have the same diagnosis, but we are so different from one another — it makes me wonder how all of us can expect to have similar experiences.

Autism is a huge spectrum. At one end of the spectrum are the very verbal and very functional autistics, to the point where they are almost indistinguishable from their typical peers. At the other end are those who are severely affected by social language ability, intellectual ability and functional skills.

Then there are the gifted savants — the autistic geniuses. These are people such as Stephen Wiltshire, who can reproduce entire cityscapes after just seeing them for a few minutes from the air. As a result, autism has become highly romanticized. Autistics are thought to be geniuses like Albert Einstein and Isaac Newton. In our technological age, the leading stereotype of the autistic is the socially awkward but wealthy Silicon Valley techie, which is a far cry from the remaining thousands.

There are also a bunch of comorbidities that many of us autistics have, such as attention deficit hyperactivity disorder, obsessive compulsive disorder, bipolar disorder, sensory dysregulation and anxiety. Any combination of these disorders can make our experiences all the more different from other people on the autism spectrum.

When it comes to the college-going, nonverbal, typer-communicating autistics such as David Teplitz and me, the diagnosis just gets “curiouser and curiouser,” as Lewis Carroll’s Alice would say. We are developmentally all over the place in almost every aspect of our lives. So where do we fit in on this giant spectrum?

I’ve found that this confusion or misunderstanding of autism means that people don’t know what to do with us or how to act around us. Autism is kind of like the elephant in the room. The reaction is sometimes a nervous, “Oh, I’m sorry you have autism,” which does not make for a good conversation starter. As a result, many autistics choose not to divulge their diagnosis if their symptoms are mild or not obvious. It’s just too difficult.

This confusion has also led some people to misuse the autism label in everyday life. The character of Larry David in the TV series “Curb Your Enthusiasm” lies about having Asperger’s (which is now included in autism) to excuse his rude behavior to his peers. But such false impersonations are a real disservice to the autistic community.

There are very real societal consequences as a result of this very broad spectrum. We are thrown into this big bucket of autism, but it’s almost impossible to arrive at a one-size-fits-all solution. Treatment options are all the more difficult and complex because each autistic is different.

The irony of this huge bucket is that even medical doctors are confused and attribute treatable causes to autism. When I got agitated in my pediatrician’s office as a child, she assumed that it was because of autism and called for the ambulance to sedate me. Luckily, the emergency doctor thought to check my ear and realized that I actually had an ear infection.

Community support can be hard to access as well. Programs seem to have specific profiles of autism in mind and often prefer the easier cases. As a result, families and individuals with more significant challenges may face a dearth of support staff and services.

Thankfully, there is a lot of research being done on the biology of autism. While there has been some success, the road to applicable and specific solutions is a long way away.

In the meantime, we on the spectrum muddle our way through life and hold our collective breath, waiting for those breakthroughs that we desperately need.

Hari Srinivasan writes the Thursday column on his experience as an nonverbal autistic student. Contact him at [email protected] and follow him on Twitter at @HariSri108.